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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jackie
Have a lovely weekend with the sun and your Kindle , hope you now have some respite from all the pain, fingers crossed the Simponi does start to work very soon.
Love Julia xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jackie Hope things continue to improve with the Depo and you are getting chance to enjoy your Kindle ... something I haven't yet talked myself into! I do like my books  I wonder whether given your lack of response etc to the various 'high power' drugs if it would be worth going back to square one and doing the rounds of the lesser known but equally effective, in some cases, DMards? Think this might be where I'm heading after recent news so hoping there may be some virtue in this. I firmly believe RA is not one disease and to try to treat it as such with this raft of highly toxic grunge is a sure fire way to miss the on ething that may do us some good! Just a thought  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Dear All Just thought I would update you following my desperate posts in the last couple of months. Fourth injection of Simponi yesterday, and I can honestly say I am feeling better. This may well be the depo injection I had two weeks ago, but the awful fatigue has gone, I can cope with the joint pain and I am moving more freely. I had a little bit of a flare last night after the injection, and did not sleep well as I felt so hot but today, someone at worked commented I do not look so washed out and seemed to be moving better.  I felt I should post this today, after reading several posts from existing and newly diagnosed people who are struggling and think there is no light at the end of the tunnel. Yes I do get to see the light, maybe not brightly and certainly not all the time, but there is definitely light (and it is not coming from the current weather!!). Hope you all have a good, reduced-pained (you know what I mean) weekend. Jackie xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jackie Brilliant news its great you are feeling that much better at least you now know the drug is working and quite likely and hopefully you will improve as time goes by. I think with the Cimzia I didn t get the full effect for well after six months and thats with injecting every two weeks. Like we all say there is light even if its not shinning that brightly at the end of that sometimes very long tunnel. Have a lovely weekend, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Hi there. I don't come here very often now, just to mooch around mostly as there's so much useful first hand information.
Please don't take this the wrong way but your story has been reassuring to me. I've also reacted badly to everything they've given me - Sulfalasalazine, MTX, Plaquenil, Leflunomide, Humira, Enbrel. I'm sure there's another but I've forgotten!
I currently bounce between flareups, which I treat with co-codamol, Naproxen and oral steroids (injections don't work either for some reason), and remission. At my last consultation we discussed moving away from anti-TNFs and biologics as they obviously cause more problems than they solve. Instead we're looking at going back to the 'old treatments' like penicillimen, gold injections etc. An infusion was mentioned but neither of us are keen to try it unless things get desperate. The fact that Simponi seems to work for you has given me a little hope that perhaps there may be something else out there I can try.
Good luck and I hope it continues to work for you.
xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Mairead-H (sorry I don't know your full name)
Thank you for your reply. I am sorry that you have failed on so many drugs. As explained previously, I failed on Humira, Enbrel, Sulfasalazine, Leflumonide and they had to stop an infusion of Rituximab as I had a massive anaphalatic reaction.
My Rheumy was very reluctant to try me on another anti-tnf as I had failed on so many drugs but I pushed for one more and that was the Simponi. It has a completely different make-up than the other anti-tnfs. I have had absolutely no reaction to this drug when injecting. The injection does not even hurt. More importantly it is starting to work. I believe that the Simponi is made from humanized cells and that there are no preservatives and a much smaller chance of any reaction.
I am not saying it is going to work for you as we all react differently, but there has been such a difference for me with this drug. I know it is not being used as a first line of defence in anti-tnf's but it may be worth mentioning to your Rheumy team next time you speak to them.
Whatever medication you decide on I hope you find something that suits and more importantly helps.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Thank you I'll be sure to put this one on my list of possibles. I'm thinking if you had a similar history to me drug-wise, there's a good chance this'll work for me too
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Rank: Advanced Member  Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi, Not so much a reply but a question, seeing as Simponi is already here.
On Wednesday I am going to see the rheumy nurse. The consultant asked if I had a problem self injecting my methotrexate. When I said no he said that he would recommend Simponi to the nurse. Now after reading some of the posts I am not sure whether it is self injected or not ! Can anybody enlighten me please ?
John.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi John Simponi (Golimumab) is a self injectable pre-loaded anti-tnf drug. The recommended dosage is 50mg/0.5ml once a month. Often used in combination with Methotrexate. Hope it proves successful for you Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi Lyn, Thank you very much. I have a better idea of what to expect now. John.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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John As Lyn advised it comes in a pen for self injecting. I can honestly say it is the best injector I have used out of three anti-tnf's and Methotrexate. Absolutely no pain. Good luck. Hope it works for you. Jackie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Oh bum! That's one for experience then. I know what you mean about going out jackie- I went to sainsburys coffee shop in my chair this week and it's pretty much the first time ive been out since the holiday to (swoon) Florida back in march, it's a little thing but worth it. We all hate the steroids but as you say, you need it- no medals for martyrdom on here  I'm back on half dose of enbrel and the steroid and although the ra is active im enjoying a few days of feeling my general movement has been improved with the new knee. Hope you got out a little jackie- it's important to stop you going nuts Love Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Thanks for your reply Jenni. My darling Daughter finished her GCSE's today and I wanted to get her a cake to celebrate. So normally I would have sent the hubby but I decided to go to Tesco's myself this morning on the way to work. I managed to park right outside and had a choice of all the disabled spaces (7.30 a.m is a good time to go), and then managed to hobble around Tesco's getting a cake, card and candles. Why is it that when you only have a couple of things to get, they have to be completely at different ends of the shop.  This evening it was all worth it when I presented my Daughter with her cake. Her face lit up not just because of the candles. So thank you steroids, they did manage to help in putting a big smile on my Daughter's face and gave me a glow of satisfaction. A small outing like this to anyone else does not even get thought about, but to the likes of us a big victory. I hope the enbrel and steroids keep on helping you Jenni. Take care Jackie xx
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